Risk management for people with inherited mutations
The National Comprehensive Cancer Network (NCCN) provides risk management guidelines for men and women with mutations. We recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you decide on a plan to manage your risk. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type. Note that when we use "men" and "women" we are referring to the sex you were assigned at birth.
Gastric cancer screening and prevention
- Experts recommend that people with an inherited mutation have risk-reducing surgery to completely remove the stomach (prophylactic total gastrectomy) between ages 18 and 40. Stomach removal is not recommended for people younger than age 18, but may be considered for certain patients, especially those with family members diagnosed with gastric cancer before age 25. An upper endoscopy should be performed before surgery. Upper endoscopy involves passing a tiny scope with a video camera down the esophagus to the stomach.
- mutation carriers who have not had their stomachs removed should have screening every 6-12 months by upper endoscopy with multiple random biopsies. This allows doctors to look closely at the stomach. The surgeon can pass a tiny instrument through the scope to take tissue samples from the stomach that can be checked for cancer.
Breast cancer screening and prevention for women
- Begin breast screening at age 30 or earlier based on your family history of breast cancer. Screening should include a yearly . Talk with your doctor about the benefits, risks and costs of yearly breast with contrast.
- Talk with your doctor about the benefits, risks and costs of risk-reducing mastectomy.
Other cancer screening and prevention
There has not been enough research to show a benefit from screening and prevention for other cancers in people who have a mutation. For this reason, experts recommend managing these risks based on family history of cancer. You may also qualify for clinical trials looking for more effective screening or prevention for cancer.
Get Support
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
updated: 08/06/2022
Related Resources
If you are a person with a mutation, you can find peer support through the following resources:
- FORCE blog: My Mutation and Why I Chose Preventive Gastrectomy
- No Stomach for Cancer is a nonprofit with a mission to support research and unite the caring power of people worldwide affected by stomach cancer.
updated: 03/13/2022
Paying For Care
Health plan coverage of screening and prevention varies, and deductibles, coinsurance and copays often apply. If you need preventive services and your insurance company denies your claim, your health care provider can help you write an appeal letter, or you can use one of our sample appeal letters. If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.
Visit our section on Insurance and Paying for Care: Screening and Prevention for more information.
updated: 11/15/2022
Open Clinical Trials
- NCT03030404: Hereditary Gastric Cancer Syndromes: An Integrated Genomic and Clinicopathologic Study of the Predisposition to Gastric Cancer. Researchers want to gather data about hereditary gastric cancers. They want to learn about changes these cause in the body and about the genes involved.
updated: 05/03/2023